Thank you, Rachel! I am sorry to hear what you've been through, and am glad to hear that the surgery provided some improvement.

It is quite interesting to hear that you experienced POTS and TOS together. I myself am somewhat skeptical of the link, but there doesn't seem to be any other explanation of it.

I have in fact scheduled a consultation with Dr. Donahue at Mass General, and will be getting Botox and a CT scan this December. So presumably if there is indeed arterial compression it will show up on the scan.

In my case, the symptoms do not seem to vary based on my arm position. The progression has been gradual and steady, starting with muscle pain in my calves, and now POTS, OH, and finally brain fog, over time these past 5 years. If it's as simple as arterial compression, I would be quite happy to get relief from surgery, of course.

On the other hand, I have to wonder if this is somehow a neuropathy triggered by the TOS. I have been referred to a general neurologist at UCSF, and plan to ask them about what kind of imaging or other diagnostics we could do to look for a neuropathic explanation. The fact that I have OH and also general muscle and calf pain makes me wonder if a skin punch biopsy to look for small fiber neuropathy is in order.

Hi -

How are you feeling?

We’re you successful in finding a doctor for your symptoms.

I’ve had TOS & Pec Minor for 5 years now.

I do receive Botox injections for my right side scalenes, and pec minor. Also trigger point injection for pec minor.

The injection help about 50-60 % relief. I couldn’t imagine not having them.

Very temporary relief. Botox every 10 weeks and trigger point injection every 6 weeks.

My pain management specialist is at UCSD. I’m also working with a vascular surgeon at UCSD.

The vascular surgeon is saying to have a pec minor tenotomy. My other option is decompression surgery.

It’s been such a long path I’m not sure what to do.

There’s no guarantee any of this will work.

Best Wishes,

Cindy

Lester, you calf pain is likely from your POTS re: pooling of blood in the legs - consider compression stocking or water therapy / recumbent bike. Brain fog is also very common in POTS as well as IBS / Mast Cell disorders. There are known links now that many POTS patients also have hEDS or ehlers danlos syndrome - hypermobility.

EDS is a connective tissue disorder that usually presents as joint hypermobility and ligament laxity leading to micro tears and scar tissue formation. I personally have a long history of arm, hand and neck issues and whiplash. Numerous nerve compression issues from scar tissue.
I have been struggling myself with NTOS for about 5 years and been thru the gamut of all modalities and injections. My right arm and chest/neck are becoming disabled and weak. Can't even cut vegetables or prepare food.

Looking down triggers neck numbness. Raise my arms at all and it worsens. Dry needling, massage and cranial sacral therapy helpful but short term relief. Recently diagnosed with VTOS with subclavian vein compressed on abduction picked up with MR Neurography. To make matters worse, I fell about 12 years ago and had rotator cuff surgery on this side. Im making my rounds thru vascular TOS guys. They are afraid to touch me because of the ligament laxity. One surgeon is blaming the TOS on poor posture which no matter how much PT I do, the ligament laxity doesnt change.
Vagus nerve runs thru the neck and some are saying compressions in neck or vascular system cause POTS. Im not so sure about that although Im not dismissing it. My daughter has severe POTS, hEDS and IBS and all the symptoms you have. She had QSART test that diagnosed the small fiber neuropathy. This is common in POTS too. Not sure a skin biopsy would be of any value. Can't do anything for it anyway.